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Health Department Advance Directive Registry becomes operational.

The Virginia Department of Health's secure on-line Advance Directive Registry, established through a public-private partnership with Microsoft[R] HealthVault[R] and UNIVAL, Inc., became operational in December 2011 for individuals to store and retrieve heath care decision-related documents. An individual may now submit his or her 1) health care power of attorney, 2) advance directive created pursuant to the Health Care Decisions Act, and 3) declaration of an anatomical gift made pursuant to the Revised Uniform Anatomical Gift Act, [section] 32.1-291.1 et seq. and any subsequent revocations of those documents to the registry. Although the legislation requires the person submitting the documents to pay any fee prescribed by the Department, submission of documents to the registry is currently free.

The Advance Directive Registry may be accessed at The website provides instructions enabling an individual to register and set up an account to store the individual's documents, access to a downloadable advance directive form, the ability to view documents with an ID card, and links to Microsoft HealthVault, the Virginia State Bar and Virginia Hospital and Health Care Association websites that provide sample forms and information about advance directives, and Donate Life Virginia for access to the organ, eye and tissue donor registry.

The Virginia General Assembly enacted [section] 54.1--2994 et seq. in 2008 directing the Department of Health to establish the secure on-line registry. Section 54.1-2995 specifies the documents that may be submitted to the registry and provides that only the person who executed the documents may submit them. It requires that data and information contained in the registry be kept confidential and exempts it from the Virginia Freedom of Information Act. This section also requires the Board of Health to adopt regulations pertaining to implementation of the registry including 1) determining who may access the registry, including physicians, other licensed health care providers, the individual and his legal representatives or designees, 2) providing annual reminders to registry users of which documents they have registered, and 3) setting any fees. The regulations (1) state that it is the responsibility of the person registering the document to provide persons with information necessary to access the registry, which includes the person's name, PIN and password. 12 VAC 5-67-30.

Submission of an advance directive to the registry is not required to make the directive effective. The registry has been established as a convenience to the public to provide a secure place to store these documents and to permit healthcare providers and others to easily access them when needed. Section 54.1-2996 specifically provides that failure to register a document with the registry does not invalidate the document and failure to notify the registry that a document has been revoked does not affect the validity of a revocation as long as it was revoked in accordance with statutory requirements.

In 2010, the General Assembly amended the statute to remove initial requirements that documents filed with the registry be notarized. It also added a requirement in the second enactment clause requiring the Commissioner of Health to work with the Department for the Aging, Department of Health Professions, the Bureau of Insurance, and the Virginia State Bar and obtain input from a multitude of private stakeholder organizations to develop and implement a plan for informing the public about the availability of the registry.

The General Assembly enacted the legislation establishing the registry at the onset of the current recession in 2008 with no funding available. As a result, it instructed the Department of Health to solicit grants, gifts, contributions and other assistance in establishing the registry from federal, local, or other private sources to make the registry available. As a result of this unique public-private partnership, the registry operates with no state funding.

UNIVAL, Inc. hosts the registry, providing a toll-free telephone number and help desk available Monday through Friday from 8:00 a.m. to 5:00 p.m. Documents may be submitted to the registry through any process available to the user, such as uploading a document in .pdf or .tif format, faxing with a fax cover sheet to a toll-free number maintained by UNOVAL, or using regular mail. The individual may select five email addresses, including those of family and friends or designated representatives and health care providers with whom to share their PIN and access code to access their documents. The individual should receive a wallet card to carry with him or her to provide to healthcare providers when necessary. UNIVAL uses contact information to provide news, information about new features, services or updates to the user. It also sends yearly renewal notices to users. Users must reply that the information registered is accurate or make changes within six months of the notice or their account will be deactivated. It archives data for five years unless a registered user asks that the information be deleted.

In order to access the website, a user must agree to the Terms and Conditions currently posted on the Advance Directive Registry website, which according to the Terms and Conditions, may change at any time without notice to users. As part of the Terms and Conditions, the individual agrees not to provide any false information to the registry and to update or correct any information if it becomes outdated or misleading. This means that each user is obligated to upload new documents when changes are made, if information changes or if an agent changes. Individuals must therefore remember to update their documents when changing any end-of-life or healthcare instructions, or healthcare agent to prevent any healthcare providers to whom they may have provided access from following any outdated instructions.

During the same session at which it passed legislation enabling the establishment of the registry, the General Assemble also make significant revisions to the Health Care Decisions Act, Virginia Code [section] 54.1-2981 et seq. Prior to 2008, all individual could only make an advance directive providing instructions for care and treatment when in a terminal condition or appointing a health care agent to make health care decisions for them while incapacitated. That year, upon recommendation of the Commission on Mental Health Law Reform, the General Assembly expanded the use of advance directives to permit the individual to give instructions related to all types of health care situations, not only end-of-life decisions. It also included provisions found in other states in separate so-called "psychiatric advance directives," with explicit provisions enabling an individual to authorize or refuse treatment for psychiatric illnesses, including authorizing treatment over their own objection or limited admission to a psychiatric hospital. It is important to note that these advance directives, including provisions related to treatment for psychiatric conditions, may all be submitted to the Advance Directive Registry.

The Advance Directive Registry is in its early implementation stages and issues concerning its implementation will undoubtedly arise. Some issues have already been identified including concerns about security of the documents. Carrying wallet cards that contain an individual's registry access information and providing passwords to health care providers for inclusion in their patient records may pose risks.

Another issue involves the legal requirement that only the person executing the document may submit it to the registry. Many older citizens and individuals with disabilities may not have access to technology to readily enable them to submit their documents to the registry or to access them once submitted. In addition, as a person becomes more incapacitated--the very situation for which individuals execute these documents--he or she may be unable to receive or act upon the annual notices received from the registry within the six months required and their documents may be deactivated. An open question also remains as to whether a guardian, agent or legal representative may respond to the annual notice or provide updates or changes in information to the registry. An amendment to the statute to permit the person's agent, guardian or legal representative to do this might be helpful. In the meantime, it is important that the individual provide the registry with the internet addresses &their agents, representatives or family members, so that they may assist them with this process. The Health Department is considering all of these implementation concerns to which no easy answers are available.

(1) The full regulations, 12 VAC 5-67-10 et seq., may be accessed at: 12VAC5-67-10.
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Publication:Developments in Mental Health Law
Date:Apr 1, 2012
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